Wednesday, 18 February 2015

WHAT CAUSES MORGELLONS DISEASE?

Morgellons Disease has been described as a delusional belief, yet patients struggle with a complex multisystem illness with little or no help from their doctors.

A recent research paper now reveals the scientific evidence that shows Morgellons Disease is an infectious disease.

Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients  

Marianne J Middelveen1, Cheryl Bandoski2, Jennie Burke3, Eva Sapi2, Katherine R Filush2, Yean Wang3, Agustin Franco3, Peter J Mayne1 and Raphael B Stricker14*

link here 

Abstract

Background

Morgellons disease (MD) is a complex skin disorder characterized by ulcerating lesions that have protruding or embedded filaments. Many clinicians refer to this condition as delusional parasitosis or delusional infestation and consider the filaments to be introduced textile fibers. In contrast, recent studies indicate that MD is a true somatic illness associated with tickborne infection, that the filaments are keratin and collagen in composition and that they result from proliferation and activation of keratinocytes and fibroblasts in the skin. Previously, spirochetes have been detected in the dermatological specimens from four MD patients, thus providing evidence of an infectious process.

Methods & Results

Based on culture, histology, immunohistochemistry, electron microscopy and molecular testing, we present corroborating evidence of spirochetal infection in a larger group of 25 MD patients. Irrespective of Lyme serological reactivity, all patients in our study group demonstrated histological evidence of epithelial spirochetal infection. Strength of evidence based on other testing varied among patients. Spirochetes identified as Borrelia strains by polymerase chain reaction (PCR) and/or in-situ DNA hybridization were detected in 24/25 of our study patients. Skin cultures containing Borrelia spirochetes were obtained from four patients, thus demonstrating that the organisms present in dermatological specimens were viable. Spirochetes identified by PCR asBorrelia burgdorferi were cultured from blood in seven patients and from vaginal secretions in three patients, demonstrating systemic infection. Based on these observations, a clinical classification system for MD is proposed.

Conclusions

Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borrelia spirochetes that cause Lyme disease. Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy.

The research paper is discussed on PR Web release here  

There is very much of interest in this important paper for those with Morgellons but also in respect of Lyme Disease.
Just a few observations from me from a Lyme Disease perspective-
1. International collaboration of authors and also acknowledging supportive discussions. ( Thanks to The Charles E. Holman Morgellons Disease Foundation for funding - Grant money from governments for Lyme disease have produced little over the past 30+ years to help patients, according to the late Willy Burgdorfer here )
2. Technology used to identify without question the organisms of Borrelia present rather than the hit or miss that many patients are left with - antibody tests.
3. This study shows the false negative antibody tests in some patients.
4. This study highlights persistent infection despite many patients having prior treatment of antibiotics.
5. Systemic infections as indicated by finding presence of Borrelia in blood, tissue and vaginal fluid in various patients.
6. Interesting to read the support from Dr Alan MacDonald who recently published on his method of identifying Borrelia using FISH and Beacon Probes here The comments on this article are worth noting.
An earlier post on my blog about Dr MacDonald's work using FISH and Beacon Probes  here 

Thursday, 5 February 2015

ECONOMIC COSTS OF LYME DISEASE LESSONS FOR PHE







































BEAUTY AND THE WEE TICK - Photo taken in Killarney National Park Ireland.

An interesting article published today in Science Daily should be heeded by our Health Authorities in UK and Ireland, taking tick borne diseases more seriously may help to reduce our rising healthcare costs.

Johns Hopkins Bloomberg school of public health looked at cases of Lyme Disease.

'New research from the Johns Hopkins Bloomberg School of Public Health suggests that a prolonged illness associated with the disease is more widespread and serious in some patients than previously understood. With an estimated 240,000 to 440,000 new cases of the tick-borne illness diagnosed every year, the researchers found that Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year -- or nearly $3,000 per patient on average -- in return doctor visits and testing, likely to investigate the cause of some patients' lingering symptoms of fatigue, musculoskeletal pain and memory problems. These visits come after patients have finished their original course of antibiotics.'

'The Centers for Disease Control and Prevention estimates 10 to 20 percent of those treated for Lyme disease with the recommended two-to-four week course of antibiotics continue to have symptoms. But, in the new study, the researchers found that more than 63 percent of those treated for Lyme disease had at least one PTLDS-related diagnosis -- a rate 36 percentage points higher than those who did not have Lyme disease.'


'The study's lead author John Aucott, MD, an assistant professor of rheumatology at the Johns Hopkins University School of Medicine, says it does no good to keep debating the existence of long-term problems related to Lyme disease while people are suffering a debilitating illness. And he says that increasing awareness of potential complications is crucial to avoid misdiagnosis and unnecessary medical testing.
"These patients are lost," he says. "No one really knows what to do with them. It's a challenge, but the first thing we need to do is recognize this is a problem. There's not a magic pill. These patients already got the magic pill and it didn't work."
"Health care costs, utilization and patterns of care following Lyme disease" was written by Emily Adrion, MSc; John Aucott, MD; Klaus Lemke, PhD; and Jonathan P. Weiner, DrPH.
This research was funded by a grant from the Lyme Disease Research Foundation.'

This study is based on patients diagnosed early in their illness and treated, but here in the UK and Ireland there is evidence through patient charity groups, that patients are rarely diagnosed and treated at that early easier to treat stage, thus increasing the numbers falling into a debilitating illness.

All too often Public  Health England quotes the numbers of positive serological cases currently about 1000 a year in England and Wales but fail to recognise that even CDC accept now that the true figures are likely to be 10x that of positive serological cases.

You do the maths but I make that £20,007,000 a year for England and Wales.

At a recent Parliamentary meeting on Lyme disease - our PHE 'expert' claimed that being an island we had less cases, but this fails to consider two important factors - one that ticks are carried by birds Intercontinentally and that Borrelia infection (Lyme Disease) has been around for 15 million years.

Lack of research and lack of a reliable test may have more to do with the lack of cases found in the UK and Ireland.

Link to Parliamentary meeting here http://lookingatlyme.blogspot.co.uk/2015/01/lyme-disease-parliamentary-meeting.html


Friday, 30 January 2015

WHAT CAUSES ALZHEIMER'S DISEASE OR DEMENTIA?



Lyme Disease and Dementia, Lecture and Power Point presentation by Dr Alan MacDonald from John E Grinstein on Vimeo.

What causes Alzheimer's Disease or Dementia?

Such an important question - The Alzheimer's Society estimates that there will soon be 850,000 people in Britain living with dementia, the majority of whom are wholly or partly due to Alzheimer's disease. The economic costs of this will rise to over £26 billion.

The above Vimeo lecture from Dr Alan MacDonald details his work and modern technological developments that are able to show Borrelia infection in Alzheimer's brains.

With latest technology Flouresence In Situ DNA Hybridisation  (FISH) and DNA Borrelia Burgdorferi specific probes he shows further studies he has done with peripheral blood  https://cloud.gonitro.com/p/iaaxzXsfbUBRef55xbwmcM
and Spinal Fluid https://cloud.gonitro.com/p/c3E6l8iDP5Jl1c0dUcG3Bu

Dr MacDonald further says -

Molecular Beacon DNA probes for two open reading frames in the Borrelia burgdorferi chromosome have been developed and Validated for their specificity in hybridizing uniquely to burgdorferi Borrelia DNA.


RESULTS OF VALIDATION STUDIES:
Borrelia burgdorferi pure culture strain ATCC 35210 = POSITIVE
Borrelia Hermsii ,pure culture = NEGATIVE
Also Negative results with ALL. OF. THE FOLLOWING. : Normal human blood, normal by cal squamous epithelial cells, 
oral bacterial microbes, E.coliCandida albicans

Cerebrospinal fluid submitted from a volunteer for molecular evaluation for possible Borrelia DNA IN THE SPINAL FLUID.
( Hospital testing of the spinal fluid produced Normal glucose, Normal protein, normal white blood cell and red blood cell counts,No bacteria by culture of spinal fluid, no spirochetes seen in cytology examination


MolecularBeacon DNA PROBE RESULTS : Positive for Borrelia burgdorferi spirochetes


Conclusions:
KENTUCKY resident, adult male, chronically ill, exact cause of chronic illness not diagnosed after multiple physician visits
Lyme ELISA : NEGATIVE
Lyme WESTERN BLOT : NEGATIVE ( only 41 KD band present)
Patient gives a history of multiple tick bites in Kentucky, no erythema Migrans rash noted at any time


Summation: DNA PROBES (2) demonstrate. Many Borrelia burgdorferi in the cerebrospinal fluid by 
FISH method ( Fluorescence In Situ Hybridization) . Many spirochetes seen in fresh up concentrated spinal fluid
By FISH, indicating a very heavy load of infection.
No host immune or leukocytic , macrophage response to the spinal fluid BorrelIa burgdorferispirochetes.
Chronic illness - un-categorized with conventional medical testing - 
Diagnosis: Chronic Lyme Borreliosis, co- infection status not yet addressed by additional proper testing


and from Dr MacDonald -

The FISH DNA hybridization. Will settle the heretofore contentious debates about the REALITY OF CHRONIC BORRELIA ILLNESSES.

I WILL PROVIDE THE METHODOLOGY AND THE DETAILS OF MANUFACTURE OF THE 
MOLECULAR beacon DNA PROBES IN AN UPCOMING PEER REVIEWED PUBLICATION.

AN Epifluorescent microscope is required to accomplish the microscopic exams.

For a limited time I will continue to receive blood smears and Spinal fluid specimens
To extend these observations.

I will donate the peer reviewed methodology Free of charge to persons who 
Own an Epifluorescent microscope.


The Inconvenient Truth of the reality of Seronegative Lyme Borreliosis or IgM reactive serology in Patients with " Late " chronic Borreliosis. Will be embraced as multiple scientists in international Laboratories. Implement the FISH METHOD. for Borrelia detection in blood, seminal fluid, spinal fluid,amniotic fluid,
Arteritis
Or...chamber or the eye Aqueous ...
and biopsies from solid organs or examination of autopsy tissues, with the FISH METHOD USINGBORRELIA BURGDORFERI

DNA hybridization will settle the contentious category of chronic Borreliosis,
Once and for all time...

Links to additional FISH POSITIVE RESULTS FROM CHRONIC BORRELIOSIS AND FROM AUTOPSY CHRONIC BORRELIOSIS: 


http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=5681

Further information and images - 
http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=5664&p=41363#p41450
http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=5695
http://f1000.com/posters/browse/summary/1097535


For over 100 years it has been known that the spirochete Treponema pallidum, the causative agent of Syphilis causes slowly progressive dementia, cortical atrophy and amyloid deposition  (1)

It is recognised that spirochetal infection Borrelia (Lyme Disease) can also cause Alzheimer's and Dementia (1,2,3,4). 
Sadly over reliance on unreliable antibody tests has held back the science in the field of diagnosing Borrelia infections. (5)

Prof Judith Miklossy (1) and the Lancashire University Dental department found Dental spirochetes in Alzheimer's brains. (3,6)


Tuesday, 27 January 2015

LYME DISEASE SPIROCHETES ENTER AND LEAVE RED BLOOD CELLS -PROF MORTON LAANE

Interview with Morton Laane  on blood microscopy for visualising Lyme Disease spirochetes.


Story at-a-glance 
✓ The retired biologists Morten Laane and Ivar Mysterud were subject to heated debates in the Norwegian media last year due to their use of microscopy as a tool to examine blood from people who have become chronically ill following tick bites. 
✓ In this interview Morten Laane deepens central aspects around microscopy. In the previous interview Ivar Mysterud presents his view of the criticism. 
✓ The microscopy methods used have deep historical roots, however, are now considerably improved for detailed observations and digital recordings of bacteria and parasites which reside in red blood cells. 
✓ Everyone can easily look through a microscope; however, it demands great and time-consuming work and experience to become decent at microscopy. An understanding of the mechanisms of the microscope is required, and the person executing the microscopy needs to possess interdisciplinary experience when interpreting what is observed in the specimens. 
✓ Studying the presence of microorganisms in blood is thus demanding. 
✓ In comparison to other test methods, microscopy shows the immediate situation in a specimen. 
✓ Laane rejects the criticism that they have not observed real spirochetes (spiral-formed bacteria) and co-infections in the blood of patients sick after tick bites. The structures are not protein fragments from blood cells during decomposition, by some called pseudo spirochetes. He has techniques to distinguish beyond any doubt the difference between spirochetes and pseudo spirochetes and has filmed spirochetes that actively move in and out of red blood cells. Laane also finds it incorrect to call anything pseudo spirochetes and he challenges the argument from opponents suggesting that general basic concepts of blood microbiology may be wrong. 
✓ Laane is equally strong in his persuasion that microscopy is an invaluable tool for studying blood of people who have become chronically sick after tick bites. The results from a new, ongoing research project might indeed become useful for this group of patients.

The above is taken from - English translation of article in Helsemagasinet VOF no. 6/2014 This is a translation of an interview published in September 2014 in Helsemagasinet vitenskap & fornuft (VOF; see www.vof.no) no. 6/2014 on pages 78–81. It directly follows an interview with Ivar Mysterud on pages 74–77 in the same issue. It is translated by Iver Mysterud and slightly edited in cooperation with Morten Laane to better fit 

Go to the main article for a more detailed read - 
http://vof.no/wp-content/uploads/2015/01/Borrelioseintervjuer-engelsk-Laane-oppslag.pdf 

'Some of your critics have objected that you do not see spirochetes in the microscope; however, instead observe protein fragments from blood cells during decomposition or other artifacts, by some called pseudo spirochetes. What is your comment to such arguments? 
– Protein fragments from blood cells during decomposition do not move in and out of red blood cells in orderly patterns, Laane answers – the movements we observe are typical for living structures. – We study living organisms and have filmed spirochetes when they move out of and into red blood cells. The objection concerning pseudo spirochetes is misunderstood and irrelevant, he continues.

Earlier post on Morton Laane's work 
http://lookingatlyme.blogspot.co.uk/2013/03/test-for-borrelia-lyme-disease.html

Prof Laane paper http://phys.org/news/2013-06-classic-microscopy-reveals-borrelia-bacteria.html#jCp

Prof Morton Laane paper go to the bottom of this link for access to the full paper http://www.biomedicalreports.org/index.php?journal=bbr&page=article&op=view&path%5B%5D=98 


Video of Borrelia in the blood and what looks like borrelia from red blood cells http://www.youtube.com/watch?v=YxSHL9xGCgo




 

Monday, 26 January 2015

LYME DISEASE PARLIAMENTARY MEETING UK

Denise Longman presentation to a Parliamentary meeting 

on Lyme Disease on 19th January 2015

Links to presentation with slides can be found on 
Informed Lyme Patients – Presenting our Concerns about Lyme Borreliosis
Ladies and Gentlemen:
I’m speaking today because it’s my duty to the 12,000 plus signatories to the UK Lyme Petition, which demands more public awareness, reliable diagnoses and adequate treatment for Lyme disease. And also to explain why patients are dissatisfied with PHE’s management of borreliosis in England.
Grave Concerns
Congenital transmission
Alzheimer’s disease and other Dementias
Sudden deaths from stroke and heart disease
Blood and tissue banks contaminated
Public and doctors not aware of the true incidence
Chronic disease denied - therefore prevalence not monitored
Patients denigrated
Congenital transmission
We have families in this room and on our Facebook group who have found that their children are infected, most probably from birth.
There is documented evidence for placental transmission, which first dates back to 1985, and now amounts to 28 peer reviewed papers and 88 Medline links showing that this occurs. In summary, if antibiotics are used during pregnancy the outcome is favourable; but if not, 67% of pregnancies will have a bad outcome.
Borreliosis is damaging not just the generation who are infected now, but the next generation as well.
Alzheimer’s disease and Lyme dementia
The Alzheimer's Society estimates that there will soon be 850,000 people in Britain living with dementia, the majority of whom are wholly or partly due to Alzheimer's disease. The economic costs of this will rise to over £26 billion.
Borreliosis infections have been documented to produce states of dementia, and French researchers this year recommend screening for Borrelia in all dementia patients, as well as in the Alzheimer’s type of neuro-degenerative cases.
They had found “ over a ten-fold increased occurrence of Alzheimer’s Disease when there is detectable evidence of spirochaetal infection”
For more information on this topic and the DNA evidence from Dr MacDonald’s work, see the Spirochaetal Alzheimer’s Association web site. 
Imagine if antibiotic therapy could halt or partially reverse the disease! The benefit to suffering humanity would go hand in hand with a huge benefit to the Exchequer. Will the Department of Health act on this information and screen Alzheimer’s patients for borrelia?
Chronic Disease and persistent infections denied.
Over the decades the Department of Health have not informed the public that borreliosis is easy to catch, hard to cure, and can become a persistent infection. Yet there are 273 peer-reviewed publications showing persistence of borreliosis in animals and humans after the standard or even extended antibiotic therapy.
Very sick patients, with the same symptoms as they had before treatment, are being told they have a post Lyme syndrome – which is a term that refers to no defined pathology.
ME CFS and Fibromyalgia
Large numbers of ME/CFS or Fibromyalgia patients have been discovering that they have Lyme disease after private tests, the figures are 80 to 90% according to 3 prestigious ME doctors. Yet NHS doctors rarely consider Lyme disease as a differential diagnosis in suspected ME/CFS cases, despite a directive to do so in the NICE guidelines. But who can blame them, when PHE maintains that Lyme is such a rare disease, and if the tests miss so many cases?
What is the true incidence in the UK?
Lyme patients are bewildered by figures from the Dept of Health which state that the disease is at a low rate in the UK, only 1.7 per 100,000 of the population, and they are dismayed to receive letters from the Health Minister which seem to suggest there is “no Lyme problem” in our country.
Graph of incidence rate in northern Europe
In Germany the incidence is about a quarter of a million NEW cases each year. These statistics also show that twice as many women as men are infected.

It isn’t logical that the UK has the lowest incidence in northern Europe, and only 1 8oth of the incidence of our nearest neighbours, not given our role as the Heathrow Airport of the bird world. Thus patients have no confidence whatsoever in the PHE figures.
Birds are spreading infected ticks around the world
The WHO stated in a 1993 workshop in Slovakia that birds are important vectors of borreliosis 
http://whqlibdoc.who.int/hq/1993/WHO_CDS_VPH_93.132.pdf
Our own tick expert the late Professor Klaus Kurtenbach stated that pheasants and game birds all over the UK are harbouring the infection. Also, we have hundreds of millions if not billions of migratory birds entering and leaving Britain.
The WHO map
The UK was well aware of the emerging incidence of Lyme during the 1980s. By 1989, the data that UK researchers gave to the WHO shows that they found cases of Erythema Borreliosis Migrans all over Britain. 
(http://www.ciesin.org/docs/001-613/map25.gif)
A serious problem, recognised as long ago as 1993
For example, in England, in 1993, NATO held an Advanced Workshop on Lyme disease in London with many European and US doctors and scientists attending.
Oxford tick scientist Dot Carey reported that over 60% of animals, birds and ticks collected from many UK sites were infected with borrelia burgdorferi, and the results were confirmed by DNA polymerase chain reaction tests.
http://ard.bmj.com/content/52/5/387.full.pdf
1993 should have been the year when the whole of the British public was educated about the danger of tick-borne diseases. But they were not warned.
Too many antibiotics?
Some patients believe we are being deprived of antibiotics for reasons of antibiotic stewardship being put before our medical needs.
However, the amount of antibiotics that are used in farming and for pets totals at least the mount used for humans, and might be actually ten times more depending on the unrecorded illicit use in agribusiness.
Perhaps this needs addressing first before worrying about giving patients long-term antibiotics.
A Government warning is needed
We have asked repeatedly for PHE and the D of H to act with the greatest speed to 
a) Warn the public, 
b) Educate doctors 
c) Provide accurate diagnoses 
d) Give adequate treatment
One government advert on TV could begin the awareness in Britain that would soon save thousands of lives from being ruined.
It is not the job of charities and patient groups to make leaflets and distribute them to raise awareness in doctors and the public – this is the responsibility of PHE and the Department of Health.
Why wait for the situation to get worse? Why not act now? In Eastern Europe victims of tick bites go immediately to their doctor and receive antibiotics whether they have had a rash or not. Why keep our UK citizens in the dark?
We are not "disaffected patients.
We are struggling to regain our health while our public servants seem to have washed their hands of us.
In a report on Lyme borreliosis submitted to the Health and Safety Executive, in 2012, PHE refer to us as “disaffected patients”. Their policy is to “manage us”. They propose to train our doctors in ‘“disengagement” strategies’ – in other words, how to get rid of us. PHE’s Professor Dryden recently addressed infectious disease doctors at a conference, calling Lyme a “fashionable disease” and portraying patients as living in a quote: “parallel universe”.
Furthermore the same doctor has also lectured that the ELISA tests are “too sensitive” and are likely to give false positives, with no mention of the possibility of them missing 50% of cases by being falsely negative. Most worrying of all he continues to write to GPs that if the ELISA test is negative then the patient does not have Lyme disease. This is dangerous.
DNA will lead the way
Expert patients are aware of the seronegativity issue and we all know about borrelia’s ability to evade the immune system. This is a major reason we cannot have any faith in the antibody tests used by PHE.
Also, how can we rely on tests that have only been verified by the manufacturers in 54 patients, and then, only in a highly selective cohort, and in comparison to other kits relying on exactly the same methods? This is not validation by any scientific norm. The test kits used by the NHS have never been assessed for their ability to detect an infection in hard to diagnose cases, and those cases are the ones who may turn out to be the most ill due to an inadequate immune response.
PHE have acknowledged that they cannot detect borrelia miyamotoi, yet that strain is confirmed to occur in Britain.
We need to use methods such as those perfected by Eva Sapi and Advanced Laboratory Services in Pennsylvania, or the method using Molecular Beacons as described by Dr MacDonald, or the FDA approved test of Dr Sin Lee in Connecticut.
We should not rely on the detection of antibodies alone, but rather on the detection of the organism itself.
DNA PCR/sequencing technology is the only test available at the moment to detect the newly identified B. Miyamotoi pathogenic borrelia species. PHE antibody screening tests for Lyme disease will not identify this pathogen. What if it were found to be the major cause of Lyme-like diseases in the UK?
We have seen how one particular patient, Demetrios Loukas, has run the gauntlet of a system that is not working. Through serendipity, his own persistence and the sheer good luck of finding knowledgeable doctors and scientists, not forgetting the support from his MP the Minister of Justice, he is on the road to recovery. He has spent all of his savings on treatment prescribed in Germany. He is not alone, as many other patients have been forced to go abroad for successful private diagnosis and treatment.
Pity those, who know that they are infected but cannot access private treatment. Pity even more, those who struggle with their incurable “syndromes” not knowing that they are infected and possibly infecting their children! This situation is shameful.
Health Ministers and Public Health scientists, we call on you to give the British public a fighting chance to beat this epidemic. If necessary, use the expertise already available in European and American commercial labs and collaborate with as many of the knowledgeable scientists as you possibly can.
“The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.”
“Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.””
Willy Burgdorfer 2007


Links to presentation with slides can be found on 
More details about the meeting on an earlier post 

Tuesday, 20 January 2015

DR ALAN MACDONALD LYME DISEASE VIMEO FOR UK MEETING AT HOUSE OF COMMONS


PART 2 PARLIAMENT UK CHRONIC LYME CHRONIC BORRELIA INFECTIONS from Alan MacDonald on Vimeo.

Dr Alan MacDonald Pathologist kindly prepared videos to be shown at the Parliamentary meeting on 19th January 2015 and then to be shared publicly.
Part one Slide two is not quite correct maybe he has mixed up a report from another country, although there may be no physical signs hung on doctors doors in the UK the consequences of PHE management of Lyme Disease means they might just as well do so.

Thank you Dr MacDonald.

LYME DISEASE PARLIAMENTARY MEETING HOUSE OF COMMONS 19TH JAUARY

My report back from the Parliamentary Meeting in the House of Commons UK on Lyme Disease -
Just a few notes, apologies for any misunderstandings that may occur it was difficult to hear at the back and see the detail of some of the slides. Some of the presentations will become available and transcripts of the latter part of the meeting I will add links on this post when they become available.

The Meeting was opened by Simon Hughes MP welcoming us to this important meeting. Demetrios Loukas one of his constituents approached him with the problems he was having with the NHS over diagnosis and treatment of Lyme Disease. Demetrios invited Simon Hughes to the protest rally held in Manchester in May 2014 where Simon was able to discuss with many other patients and hear their similar experiences. Since Simon and Demetrios have worked together to bring this meeting about - an opportunity for the patients to present their case.

The Countess of Mar Chaired the meeting, giving thanks for arranging it and quoting several phrases such as Absence of evidence is not proof of absence.
She mentioned cultivation of the bacteria and the need to look at them with a microscope.
Patients are told negative tests mean they don't have Lyme Disease and experts refer to Lyme as a 'Fashionable' Disease and that negative serology  means you do not have Lyme.
USA CDC reported exponential growth of cases and then a levelling off but this was due to counting methods not a reduction in real numbers - in 2012 CDC reported increases to 300000 a year.
Germany 2011 800000 cases of Lyme.
Questions statistics for England as they are so much lower than other countries. (Scotland higher than England)

Dr Armin Schwarzbach presentation
Dr Schwarzbach declared no financial interests and that he was here as a private man to assist.
Borrelia Burgdorferi is an organism that is 15 million years old.
The oldest patient is Otzi the Iceman
2012 map showing areas of different species of Borrelia 
Pleomorphic forms including biofilm like colonies should be taken into account see his latest paper
 http://mic.sgmjournals.org/content/early/2015/01/05/mic.0.000027.short 
He then discussed early responses to infection with Borrelia
20% feverish reaction but only lasts a few days
30-40% of patients only, develop a Bulls Eye rash
30-40% only, of chronically infected cases remember a tick bite
Stage1
Bulls eye rash - needs to be treated
Children are of a very high risk of tick attachment especially behind the ear and in the hair.
Possible to get multifocal EM rashes anywhere on the body
Stage 2
Bells Palsy - cerebral spinal fluid infection
Often referred to as a swollen knee but may not be the knee
Acrodermatitis chronica atrophicans - ACC - an infection of the skin

Laboratory results - Dr Schwarzbach's speciality
Problems with ELISA
Showed a table of studies on sensitivity average being 43% - result false seronegativity
Problems with Western Blots
IgM Western Blot can remain positive up to 18 months 
Spinal Tap - in one study only 1 in 27 patients with proven Lyme Disease had positive spinal tap.
Shows a list of symptoms found in Lyme Disease patients and he says all symptoms listed are said to be non specific, as they are found in other diseases, but if found after a tick bite then they are specific.
A doctor needs over an hour to look at a patient to consider all the symptoms.
He talked about a doctor in the Netherlands doing LTT and ELISPOT which gives a response on the cellular level as opposed to Western blot looking for antibodies.
Borrelia Elispot (T cell specific) better specificity and sensitivity than Western Blot.
Can not exclude any disease in the World by a laboratory test.
He quotes numerous diseases linked to Borrelia - Alzheimers, MS Meningitis, CFS, etc
Antibiotics
In early Lyme treat until the Bulls eye rash has gone.
Doxycycline, macrolides
Need to treat children and pregnant women
Stage 2 Lyme
Cephalosporins, Penicillin G and Macrolides  
Persistence 
Guidelines rely on Klempner study 2001 but there are many criticisms- patients selected had been sick average 4.7 years and already failed similar treatments. All guidelines focus on Klempner study of just 50/60 patients - these dictate guidelines for the whole world! Yet other countries have different sub species.
Several studies found differently 
Dr Cameron - study not included in the guidelines but found significant improvements.
Fallon - improvements but symptoms returned when treatment withdrawn.
A comparison chart of what USA CDC guidance says compared to other doctor opinion .
Proposals
- studies ELISA v Immunoblot
- short term v long term treatments
- need new antibiotics
- basic courses for GP's
- information for population and doctors on prevention

Dr Ashworth 
Dr Ashworth is Demetrios GP and became involved trying to help Demetrios.
He says in medicine Doctors need to keep an open mind and a listening ear. With Lyme Disease we can not say it can not be Lyme Disease.
Referring to Demetrios he said we have been on a journey together - when to treat and when not to treat - we need to keep listening and keep an open mind

Chris Moore  
Is a director of a Nordic group involved with laboratory tests.
Borrelia - should have been screening for this infection differently.
He thanks Dr Schwarzbach and Dr Ashworth.
Patients are very knowledgeable about this disease, they are looking and seeking.
Large proportion have Borrelia.
Majority of patients have to find their own treatment.
Do we want our NHS to continue like this?
New Technology
Every laboratory would tell you their own testing was the best.
We need to be critical and don't just accept test report positive or negative.
Works with private doctors predominantly only sees 5/6 patients a day.
He started dealing with Lyme Disease cases in 1990's  but found clinical signs and negative test results.
Finding new technologies - pushing borders.
Borrelia is recognised as most common vector borne disease in Europe by the WHO report 10 years ago. 2011 Eurosurveillance report said the same.
It is active people getting these infections.
Ticks living longer more of them ( climate change)
infecting more people with much greater chance of people getting Borrelia.
Everywhere it is Top down hierarchy - gives brief history of medical delay in accepting advances in science quotes H. Pylori thought to be bacterial infection in 1907 but not until Barry Marshall infected himself and cured infection did medicine acknowledge in 2005.
Must not allow the same to happen with Borrelia we have the knowledge.
Compare delayed diagnosis with quick diagnosis
length illness, quality of life, improved health,loss of work-unemployment, income, etc
Short term costs to society early doctor visits compared with long term costs of hundreds of thousands of pounds.
Why no changes in reported cases by NHS?
Problems are compounded by inappropriate laboratory tests
NHS must consider better testing
Doctors should be advised to treat the EM rash
Should be public information campaign so people can protect themselves and get early treatment.

Dr Michael Wetzler
Nice guidelines do not allow a GP to give IV antibiotics
As a GP I am not in a position to differentiate with different tests
Talked about the recent Cuomo Law in New York State which prohibits the state authorities from investigating doctors who treat Lyme patients with a different approach than the Guidelines ( my link to details of this 
http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/12/18/cuomo-signs-lyme-disease-bill/20576915/ )
Been involved with complementary medicine, mentions ILADS 
Recommendations for support treatments for recovery from Lyme Disease - Probiotics, multivitamins, CoQ10, Vit B, Magnesium, transfer Factor etc.
He is happy to help patients but is keen that NHS is more open and broader to help patients.

Dr Chris Newton 
Scientific adviser to the Well One clinic
Confessed to being nervous because patients were the experts - we should be but in reality you are.
Western Blot methodology is awful and should not be used in anything other than research - it has improved but should not be the method to use.
Mentions Michael Cook's recent paper on tick transmission times
 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/
Detailed diagram of Immune system's response  after a tick bite.
Immune response but many reasons why the immune system might not respond.
We age differently and the immune system ages differently than chronological age.
What chronic stress does to the endocrine system.
Current dietary guidelines - carbohydrate induced inflammation.
T3 test does not show what goes on in body system detailed discussion.
Quotes evidence of infection documented after 16 hours of attachment of tick.
Mentions the Bristol study on ticks using dogs as sentinel hosts - suggests correlation for human risk.
Questions role of other vectors such as mosquitos.
Sexual transmission International group published in 2014 peer reviewed paper
 http://f1000research.com/articles/3-309/v1
Microscopy people doing it themselves
Dr Alan MacDonald work using FISH and PCR
European microbiologists
Peter Kemp who presents later 
Michael Cook 
Results are not accepted by NHS so no antibiotics.
He said I'm not a clinician, I'm a lab technician but  antibiotics should be given if sufficient clinical suspicion and should accept the different labs and private tests.
He said - I would go for best Lyme Blot ( discard ELISA) and use PCR
There are other factors involved such as genetics, mentions MTHFR Factor (Genetic mutation)
Slides from Dr MacDonald showing fluorescence DNA - recognises something in Borrelia as opposed to PCR. 
With nested PCR you are amplifying millions times.
Post GP/Consultant/Specialist
after antibiotics, need to concentrate on gut microbiome
Study of people with diabetes had much higher level of bacteriema in gut. 
Discussed inflammation and effect on immune system and TH1 also innate immune system
Chronic stress damages receptors of immune system causing chronic inflammation. 
Mentions Rife but prefers to discuss Electromagnetic frequencies which he believes stress cells. Quite a lengthy discussion about this.

Dr Beryl Benyon
Well One Clinic
She set up a social enterprise helping in Romania and needed funds so she set up a clinic to support her enterprise.
Lyme patients started going to her and she became interested and brought Chris in for laboratory diagnostics.
Then introduced Rife.
Found patients were coming back for more antibiotics so started to use rife.
Patients travel long distances to the clinic and not other places to go for treatment other than Breakspear.
Don't claim to cure.
250000 ME patients in the UK
GP's are now being monitored on antibiotic use. Which is already having an effect on patients even with things like UTI's.

Peter Kemp 
Treponema spirochetes - over 100 years ago were being viewed using darkfield microscopy and it is still used today to diagnose syphilis.
Peter continued to talk us through some detailed slides and videos of his own microscopy work - using staining to flourese the Borrelia and some where he used Beacon probes specific for Borrelia DNA - some of the latest technology.
He challenges Porton Down over their approach and denial of this disease.
I understand Peter will provide details of his presentation which I will link to when available.

Denise Longman
Denise gave us a brief epidemiological history - I know she will provide links to her slides and presentation and it will speak for itself.

Time was short Lady Mar curtailed Peter and Denise in order to give Dr Tim Brooks an unplanned opportunity to reply.

Dr Tim Brooks RIPL
Head of Lyme Borreliosis testing at Porton Down and the man to go for for NHS expertise on Lyme borreliosis.
He started to talk about lab tests used, amongst interruptions.
He said that he had helped to raise awareness with Estates/Landowners? Loud protest from the audience he quoted the New Forest.
He said he provided an extended Lyme panel if doctors contacted his lab he would arrange to do this (my understanding is that this side steps a negative ELISA and will do Western Blot even if ELISA negative plus several other known pathogens that ticks can transmit in UK)
Dr Brooks said he could only advise doctors of the infections patients had.
He said he had looked at other testing methods and compared with his tests    (Western Blot) 
He extended invitation for Peter Kemp to visit Porton - to do PCR  (not to do microscopy despite known problems with PCR)
Out of time with numerous questions and interruptions the meeting was closed.


In comment I will say that all the scheduled presentations were excellent, informative and well received by the audience.
Denise put across the patients feelings so well as was acknowledge not just with a round of applause but a standing ovation.
The room had a capacity of 170 with only a handful of empty seats so well attended. There were a number of doctors present but I am not sure which MP's were present not many I suspect, nor were there many from PHE or Dept of Health if any from the later.

Lady Mar thanked everyone and said that Dr Brooks had had a difficult time taking on the work from the previous mess that had been left by the management of Lyme Disease by the Health Protection Agency. 

So we have a Peer of the realm acknowledging what a mess the Health Protection Agency had made of handling Lyme Disease and other than the fact that under new guidance PHE are talking to representatives from Lyme Disease Action, there is no visible sign that anything has yet changed for patients - testing, diagnosis, treatment or even awareness of Lyme Disease.

Media coverage


BBC South Today uploaded a new video.
A Hampshire couple who spent 10-years and a £100,000 diagnosing their daughter's serious illness say more must be done to counter Lyme Disease. Kellie Maher now needs wheelchairs and mobility scooters to get around after the NHS failed to spot the illness. The condition is spread by ticks found in the New Forest, Wiltshire and Berkshire. Today, patients from the south were in Westminster to demand better testing, and the Public Health Laboratories at Porton Down near Salisbury confirmed they are now looking at that. Our health correspondent David Fenton reports.
The above video will not be available shortly so saved on You tube 

Denise's Presentation:
http://www.counsellingme.com/DenisePresentation1024x768.pps
Peter's Presentation (no video):
http://www.counsellingme.com/MicroscopyPresentation9E1400x9…
as html with video (and supplementary material to be added later):
http://www.counsellingme.com/microsc…/MeetingMicroscopy.html

A powerpoint presentation player is needed if you don't have it installed on your computer/device (except for the html version). A player can be downloaded from the Microsoft website.

Post of Denise presentation

Dr Armin Schwarzbach slides click  - Here

Dr Schwarzbach recently published - Morphological and biochemical features of Borrelia burgdorferi pleomorphic forms 
http://mic.sgmjournals.org/content/early/2015/01/05/mic.0.000027.short